October 26, 2012

I’ve just arrived home, one of a dozen Fridays since Dannie returned from India, bringing us all together again.

Productive workday. Putting my feet up, settling in for a night of knowing what needs to be done, and not doing it. Rest. That will be my only goal now. Simple rest, until Dannie awakes and starts her semblance of a day at midnight—maybe a half hour of eating something, swallowing supplements, checking in, washing up, and trying to sleep again. I will push sleep aside for the precious time with her. Her pain, sleeplessness and chasing sleep, can lead to days of not being with her awake more than a moment or two. I miss her.

Sitting in bed, the heat from the laptop is better than an electric blanket. I have conversations in my mind, often edited to nothing before committed to writing. Too much, not enough facing the formidable task of closing the gap between India, the note on August 5th, and the present.

Someone said to me, of being asked that simple question riddled with complexity for those of us who face on-going struggle: “How are you?” that she committed to tell the truth, and if they dare to ask again she would tell the truth again. This, her own personal commitment to educating others about the impact of her illness, the moment to moment “in your face reality”. I believe her to be courageous. The temptation – the interpersonal cultural imperative, is to make light, tell only the good. Soften it. Minimize, deny. Who wants to hear that the struggle continues? There seems to be some unspoken timeline that we are afforded to resolve tragedy. Unless, of course we are viewing the voyeuristic reality shows, that make profit from pain and suffering—on and on and on, at arm’s length, not real, not up close and personal. Up close, personal, we want to herald the good news, diminish the not so good, take care of those who care for us and are weary with no new responses. We want to spare them from our pain. We want them to see who we are, independent from the pain, remember who we were, who we were to become. Not want to pull back and shrink from us. Most of all, not to go away. Don’t go away.

Half full, claim optimism, focus on the positive. Yes, and genuinely, we do. Every day. Every moment, segments of moments. Celebrating each filament of light with gratitude. Each gift of lightness, love, freedom, comfort treasured.

Yes— and unveiling the challenge is important as well. They both exist, the tragedy and the triumph, side by side, inextricably intertwined. Both need to be spoken. And every time I write, I face this delicate balance. Please bear with me. Know we are joyous each day, blessed with so much love, blessed with people coming along side us, helping us to keep going. And each day we are challenged, sometimes to the edge of the abyss. Each day there is loss, each day there is victory. And Sadness. And Joy. And falling. And climbing. And soaring. And sinking. Moments of utter darkness. And white sparkling light. And faith, hope and love hold all the disparate dimensions together. We keep going.

Big deep breath. Here it goes~

Ari just sent in an English paper on line, five hours prior to the deadline. Now rewarding himself spending some time with Mike. His first season home from India, stem cells developing, he has been guarding his health while gingerly testing the limits of his new found capability a bit. Ari is an expert at pacing himself, necessitated by his illness. He has learned to step forward some, paying close attention to the “some” not becoming “too much” landing him back in bed. The unmatched sense of wellness he experienced in India is a bright and clear memory, now the ruler by which all other days are measured. His energy has subsided some, some pain has returned and he experiences a diluted array of his former symptoms. The dramatic surge forward has now retracted and settled at a place somewhere in between his baseline in bed, and the dream-like days of freedom from symptoms which he filled with adventures on the streets of New Delhi in early 2012.

He is “working out” his brain with a math and an English class, engaging in gardening therapy with dozens of plants starting up about the house and in the yard. I have long since given up on having everything in its place and instead, have welcomed new life of sprouting dates, bonsai pines, a “grove” of start-up avocado trees, fledgling plants in the corner of the living room, sprouts lining window sill in the kitchen and any surface that gets adequate sun, spray misters donning the countertops, seeds soaking in glasses, the coffee table hosting a miniature green house, and frequent reminders not to throw out any seeds yielded from store-bought fruit. New life surging forth daily, carefully tended and loved. Some thriving, some shrinking and dying, not quite taking hold. Yes, the metaphor of Ari’s and our family’s life. Not surprising that he has taken to bonsai. Bringing forth beauty from life that has been forced to grow under constrained and bound conditions.

Ari is anxious to return to India for his next treatment. We are joyfully watching some of his India “family” Blake and Shannon, on Facebook having returned to India for their next treatments. Good news, improvements to celebrate. Initially Ari hoped for December 2012, which was recommended, yet there are still sizeable bills from the first trip, and fundraising needed for the next. The Santa Rosa crew helped so much ~Golf, Picnic, and Auction, LymeLight Foundation grants, challenge grant from the National Transplant Assistance Foundation, an individual donor through the Harvest Church, events organized by Yoga of Los Altos and Crossroads Fitness, and many individual donors launched the first trip, followed by dozens of individual donors through the website, and Central Peninsula Church’s amazing home makeover welcoming us home. All giving sacrificially to help. Pure love. We pray that each and every person who prayed for us, donated time and talent, as well as funds, offered hugs and smiles, sometimes tears, would be blessed by God as they have blessed us.

We are curious about how this next chapter will unfold. Ari’s experienced improvement has solidified his confidence in the HESC treatment, and he is the best he has been since he was on the far side of this illness. Our faith, though, is in God, and we remain ready for Him to lead and us to follow. So onward with gratitude, faith and love… .oh, and more patience.

Dannie in her room, sleeping or trying to sleep, the latter more abundant. Did you know that Dannie’s birth name is Imani, meaning Faith? She changed it at ten, a mind of her own, claiming her tomboy identity and hasn’t let it go. Her toughness has remained… though beautifully and femininely held.

I saw a young woman who looked like Dannie, perhaps 19, in the coffee shop where I got a smoked salmon omelet for lunch today. Reading, computer set up on the table, a tea at hand. Focusing on the screen, the book, the screen, seemingly a student.

My eyes quickly darted away, rejecting the image before my mind formed a thought. Pain flashing from my heart to my fingertips in an instant… deep cleansing breath~ one, two, three. My gaze slowly returned to her, as a flower to the sun, without conscious choice. It was as if I was looking into a movie scene in slow motion, a dreamlike depiction of what should have been. The surroundings muted and blurred. Heart ached, at one moment in time I almost heard it, as if my heart moaning audibly with each beat, for the deep deep longing to claim such a day for my dear dear Mani. Repeat: Deep cleansing breath ~one, two, three. Calm washing through me, ushering out the wave of uninvited sadness. Returning to faith, to FAITH, to knowing that God loves her more than I. Claiming : “I know the plans I have for you declares the Lord. Plans to prosper and not to harm you, plans to give you hope and a future.” Jeremiah 29:11. The verse Dannie and I have repeated in concert, arms grasping each other, locked eyes, our mantra through countless dark nights riddled with pain, nearing death, and clawing, crawling back toward life again.

This quickly captured picture of a stranger sitting just so, lost in her world, catapulted my heart, my mind into a universe not bound by time, a gestalt of a full life I had attempted to set the stage for…Holding my dear girl in my heart- at once glistening images blasting through me on a cellular level: a student, engaged in intense conversation, laughing from her belly, pushing too hard, demanding A’s of herself, cramming in social time anyway, dancing with abandon, rushing to kickboxing coaching sessions with Tommy Winston, squeezing in studying at the beach, balancing a student budget, forgetting to call me, struggling to decide whether or not to come home for Thanksgiving as her full life has competing pulls, finding those friends that speak to her heart and mind…feeling the warm fall sun on her skin, spontaneous joy, and not knowing that it all was anything but normal… not anything to take notice of really…just a day, followed and preceded by more, and more and more, stringing together to form a life, a LIFE. Scribbling a “to-do” that springs off the page into reality, not destined to live only in ink waiting endlessly, a time when the embodiment of the written intention, would be possible.

And it will be. Dreams are the seeds of our future, and Dannie is resplendent with dreams. Doggedly stubborn, persistent. Writing her lists nearly daily. Starting again tomorrow.

I believe, God, through the HESC treatment in India saved Dannie’s life. She was spiraling down at such a pace, and we had nothing more to try. Then, when I faced the wall of my human capacity, the doors began to open, and paved the way to New Delhi. The Rapid Decent slowed yet was interrupted with dramatic and angry medical crisis of great proportions. Near death. Ineffable. The mind pictures make my body flash cold, tremble, face flush, seize my stomach ~ and I actively release them from my thoughts, from my cells to make room for good. No spontaneous healing. No rapid recovery. Yet. The decent slowed and then stopped. Now there is a modicum of discernible movement in the right direction, toward life.

That said, her suffering remains the challenge for each day, each moment. Good news, bad news. The tide has changed but she is still gasping for air, trying to right herself, and straining to identify the shore. The waves are still pummeling her, tossing and turning her. And she is still fighting. Some days she catches the current and flows with it. She has been able to get dressed once every week or week and a half. This is tremendous compared to prior to India. We celebrate. She fought to get dressed for Ari’s 25th birthday dinner, and did, and hushed me from telling Ari what a feat it was, wanting him to experience her being there for him, free and clear from concern about her.

Ari’s birthday dinner with Dannie. First time she has been able to get dressed and out of bed to celebrate with Ari in years.

There is no freedom from pain. Yet. ..

She has been taking a hiatus, trying to rest, allowing rest, to recuperate from the trek to India, the challenges that filled every day and her concussion upon returning; to position herself to welcome the next step when it arrives.

The initial vision was for her to be freed from pain fairly early in the process though we were fully informed and expected that she would need a series of treatments, perhaps four or five. While she has gotten better from her first treatment, freedom from pain was not to be had. Her brain is clearer; some of the cognitive symptoms have subsided. She has, by pure force of will, courage and grace, reduced her pain medications as they are ineffective and she wishes to free her body from their presence. Her pain doctor was startled at her success, not feeling it possible outside the hospital. But Dannie girl was determined and beat out the odds. She feels a myriad of symptoms all the time, and at times is discouraged, sad, and angry. Justifiably. Hope runs thin at times. She is prayerfully listening and following her sense that she is to rest, just rest at this time. She continues to treat Lyme, is practicing mindful meditation, stretching, following a protocol from Amen Clinics to help her brain heal and continuing to work with her Lyme MD.

We have found with much prayer and contemplation, a multidisciplinary comprehensive program in Arizona to help her with the pain, the most disabling of her symptoms. I have spoken with them several times since before India. Dannie feels drawn to this program because of its philosophy and treatment modalities. It has been recommended by her pain doctors (here and in Los Angeles) and the hospital pain teams she has been seen by. We are placing it before God as the means to get there are not yet evident. We strongly feel that a therapeutic environment, outside the walls where she has lived out her illness, is the next step, and required to promote healing. Equally as important, to introduce her to a life that she has missed. Essentially home bound since ten, this would be an amazing step toward her fully embracing the next chapter of her life, learning more of life, to prepare her for the time when she is free from illness. To be in a place with new energy, expertise, opportunity to learn and practice new coping, to try new approaches, with help at her ready disposal reducing the extreme isolation she has lived with. Access to physical therapy, acupuncture, counseling and more to retraining her brain, her body and her spirit to learn to live more fully, to move beyond the pain. Then, with more readiness, and in a stronger state, her next trip to India can be planned.

I close with a deep sense of gratitude, of expectation that none of this will be unharvested for good.

In a spirit of Thanksgiving,

Kate

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Oh Kathleen, what a journey. It’s so hard to find words … Ari and Dannie look so beautiful – your babies. I send you all my best wishes and prayers for continued healing and for lives that are full of joy, prosperity, health, and goodness.

Background In the fall of 2001, Ari and Imani (Dannie) became very ill. This caused them to be unable to attend school, due to tremendous pain and discomfort. Subsequent to a flood caused by a pipe burst in their San Carlos, California, home, toxic mold growth was discovered, to which their ... Continue reading →